Tag: End of Life Care

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Implantable defibrillators may cause dilemmas for older patients

By Carolyn Crist

Defibrillators implanted in the body to kickstart the heart can be lifesaving for some people, but as patients age they may face difficult conversations about when to replace or deactivate the devices.

Conversations about end-of-life care, in particular, can drive a wedge between patients and doctors and create difficult decisions for families, an international team of cardiologists writes in the American Journal of Medicine.

“The standard consent process does not fully inform patients receiving (the device) about all the downstream implications,” said co-author Dr. Arnold Eiser, an adjunct fellow at the Center for Public Health Initiatives at the University of Pennsylvania in Philadelphia and a professor of medicine at Drexel University.

Implantable cardioverter defibrillators (ICDs) differ from pacemakers, which control abnormal heart rhythms. Pacemakers prompt the heart to beat at a normal rate through electrical pulses, whereas ICDs monitor heart rhythms and shock the heart to prevent sudden cardiac arrest.

Older patients may face a difficult choice of when to stop using an ICD, especially if shocks become painful or it continues life longer than desired, said Eiser.

“Downstream decisions include whether the device no longer serves the patient’s best interests,” he told Reuters Health by email. “We believe a well-informed patient is an important aspect of ethical medical practice.”

The informed consent process could prompt this conversation, the study authors note. When patients agree to surgery for a device, they should be aware of the benefits and risks, and the information should be presented in a way that families can easily understand. Current consent forms tend to concentrate on short-term risks and benefits rather than broader device-related issues that may emerge later in life, the authors write.

By talking about advance care planning and next-of-kin choices regarding heart care and treatment options, doctors can document what a patient’s wishes are before facing a clinical crisis at the end of life. Regular conversations during check-ups would help as well.

“It will be better to prepare all parties for the decisions that come into play as the patient’s medical condition changes,” Eiser said. “It is an unusually complex decision, but it’s not always presented in that way.”

The decision-making process should be clarified as well, the authors urge. Older patients often listen to advice from authority figures such as their doctors. This may lead to a bias toward implantation.

Instead, ICD decisions should include the patient’s multifaceted health conditions and the future effects on wellbeing, prognosis and end-of-life, the authors write. The patient’s primary care physician and cardiologist should be included in conversations with the patient and family.

“We have to have an ongoing discussion with these patients about the possibility of deactivation,” said Dr. Annika Kinch-Westerdahl of Danderyds Hospital in Stockholm, Sweden, who wasn’t involved in the essay.

Kinch-Westerdahl and colleagues have studied the high risk of painful shocks ICD patients may feel near the end-of-life. They’ve also researched what cardiology, internal medicine and geriatric specialists understand about ICDs. Although cardiologists were well-versed in the risks and benefits, most internal medicine and geriatric doctors needed more training.

“We need to support our patients in their choices throughout their lifespans, not only at a point when they have to accept a new treatment – but also when it is time to terminate an existing treatment,” she told Reuters Health by email.

To maintain communication with ICD patients and their families, primary and cardiac care teams should appoint a doctor to stay in touch and regularly check on the patient’s decisions. Systems should be in place in primary care and specialist offices to make sure staff know how to manage ICD devices, talk about them, and reprogram or deactivate them when needed, the authors write.

“It’s important that patients are aware that turning it off is an option, especially as their goals of care shift to the end-of-life,” said Dr. Rachel Lampert of the Yale School of Medicine in New Haven, Connecticut, who wasn’t involved in the paper.

“The important question is how to improve communication between patients and their physicians,” she told Reuters Health by phone. “We all need to feel comfortable talking about it.”

Complete Article ↪HERE↩!

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Other Options to Hasten Your Death

Voluntary Stopping of Eating and Drinking (VSED)

To voluntarily stop eating and drinking means to refuse all food and liquids, including those taken through a feeding tube, with the understanding that doing so will hasten death. This is an option for people with terminal or life-limiting diseases who feel that with VSED their dying will not be prolonged. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking.

The US Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community.

Before You Start

You must prepare to voluntarily stop eating and drinking. It’s not something that can or should be started the day it is first discussed.

  1. Talk with your physician to let them know of your plans. Talk with your physician about all your medications, and ask if a sedative or pain medication will be available to keep you comfortable.
  2. Complete an Advance Directive stating in writing that voluntarily stopping eating and drinking is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts.
  3. Talk with friends and family members who might care for you during this process early about your wishes and why you may want to take this course. Their support is crucial. However, beware that for many people families are often opposed to VSED and can pose a barrier.
  4. Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
  5. If you reside in a care facility, discuss your wishes with the staff and nursing director. You will need the staff to provide support and assistance.
  6. If you are already receiving hospice care, your team can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will provide supportive care once you start the process.
  7. If your illness is not one that is likely to cause death within six months, arrange for a psychological evaluation for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision well considered.

Process

You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status.

At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.

Since dehydration will most likely be the cause of death, it is important not to drink anything once you start. Even sips of water may prolong the dying process.

I wish I could say [my father] died a gentle death. But I’m not so sure. I wish doctor-assisted death had been available to my father. I believe it is what he would have wanted.

—Christopher Stookey, MD

We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process.

Finally, one of the advantages of VSED is that you may change your mind at any time and resume eating and drinking.

People who begin this process often express a sense of peace that they can finally “stop fighting.” Some people describe a sense of euphoria or pleasant lightheadedness. There is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, urinate less, have less vomiting, and breathe more easily due to decreased congestion.

Resources

  • Read this story, in which Christopher Stookey recounts his father’s death by voluntarily stopping eating and drinking.
  • Browse peer-reviewed, academic-journal articles on the subject.
  • Watch this video, in which Phyllis Shacter describes her husband’s dying after he decided to voluntarily stop eating and drinking:

 


 

Note: With the exception of quotes, information in the following sections has been adopted from End of Life Washington.

Not Starting, or Stopping Treatment

For some terminally ill people, aggressive medical treatment may not be helpful and may prolong the dying process without improving quality of life. Under certain circumstances, treatments can increase suffering, ruin the remaining quality of life, or even shorten life.

Stopping treatment can result in a peaceful death but it may also result in increased discomfort. Consult with your physician and arrange for optimal palliative (comfort) care before stopping treatment.

Stopping treatment can be combined with hospice and palliative care or voluntary stopping eating and drinking to shorten the dying process and reduce suffering.

Palliative Sedation

For dying people experiencing so much pain or unmanageable symptoms that they cannot get relief from medications unless the dose is high enough to make them unconscious, palliative sedation provides enough medication to keep them continuously unconscious and thereby free of pain and symptoms. All nutrition and hydration is stopped, and they usually die within a few days.

People using palliative sedation should be monitored around the clock to be sure the sedation is adequate. While this intensive monitoring can sometimes be provided in the home, it is usually provided in a skilled nursing or inpatient hospice facility.

Many [people] claim that palliative sedation effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.

—Ann Jackson

While palliative sedation is an ethical and legal end-of-life option, it is not necessarily a right. While you can request palliative sedation, it is up to the medical provider to determine if it is appropriate. Some physicians and hospices are reluctant or unwilling to authorize palliative sedation. If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.

Complete Article ↪HERE↩!

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The VSED Exit

A Way to Speed Up Dying, Without Asking Permission

By Paula Span

Del Greenfield had endured repeated bouts of cancer over four decades, yet kept working as a peace activist in Portland, Ore., into her 80s. “She was a powerful force,” said her daughter, Bonnie Reagan.

But in 2007, Ms. Greenfield was struggling. She had been her husband’s caregiver until he died that year at 97, never telling her family she was feeling miserable herself. She’d lost much of her hearing. She required supplemental oxygen.

When she fell and broke an arm, “that was the final straw,” her daughter said. “She was a real doer, and she couldn’t function the way she wanted to. Life wasn’t joyful anymore.”

At 91, Ms. Greenfield told her family she was ready to die. She wanted a prescription for lethal drugs, and because she had active cancer, she might have obtained one under Oregon’s Death with Dignity statute for people with terminal illnesses.

Then her son-in-law, a family physician who had written such prescriptions for other patients, explained the somewhat involved process: oral and written requests, a waiting period, two physicians’ assent.

“I don’t have time for that,” Ms. Greenfield objected. “I’m just going to stop eating and drinking.”

n end-of-life circles, this option is called VSED (usually pronounced VEEsed), for voluntarily stopping eating and drinking. It causes death by dehydration, usually within seven to 14 days. To people with serious illnesses who want to hasten their deaths, a small but determined group, VSED can sound like a reasonable exit strategy.

Unlike aid with dying, now legal in five states, it doesn’t require governmental action or physicians’ authorization. Patients don’t need a terminal diagnosis, and they don’t have to prove mental capacity. They do need resolve.

“It’s for strong-willed, independent people with very supportive families,” said Dr. Timothy Quill, a veteran palliative care physician at the University of Rochester Medical Center.

He was speaking at a conference on VSED, billed as the nation’s first, at Seattle University School of Law this month. It drew about 220 participants — physicians and nurses, lawyers, bioethicists, academics of various stripes, theologians, hospice staff. (Disclosure: I was also a speaker, and received an honorarium and some travel costs.)

What the gathering made clear was that much about VSED remains unclear.

Is it legal?

For a mentally competent patient, able to grasp and communicate decisions, probably so, said Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn. His research has found no laws expressly prohibiting competent people from VSED, and the right to refuse medical and health care intervention is well established.

Still, he pointed out, “absence of prohibition is not the same as permission.” Health care professionals can be reluctant to become involved, because “they want a green light, and there isn’t one of those for VSED,” he added.

The question grows much murkier for patients with dementia or mental illness who have specified VSED under certain circumstances through advance directives. Several states, including Wisconsin and New York, forbid health care surrogates to stop food and fluids. (Oregon legislators, on the other hand, are considering drafting a bill to allow surrogates to withhold nutrition.)

The question intrigues bioethicists. Can your current competent self cut off nutrition and hydration for your future demented self? In a handful of court decisions, judges have declined to enforce such directives.

Can VSED be comfortable and provide a peaceful death?

“The start of it is generally quite comfortable,” Dr. Quill said he had found, having cared for such patients. The not-eating part comes fairly easily, health professionals say; the seriously ill often lose their appetites anyway.

Coping with thirst can be much more difficult. Yet even sips of water prolong the dying process.

“You want a medical partner to manage your symptoms,” Dr. Quill said. “It’s harder than you think.”

Keeping patients’ mouths moistened and having aggressive pain medication available make a big difference, health professionals say.

At the conference, the Dutch researcher Dr. Eva Bolt presented results from a survey of family physicians in the Netherlands, describing 99 cases of VSED. Their patients (median age: 83) had serious diseases and depended on others for everyday care; three-quarters had life expectancies of less than a year.

In their final three days, their doctors reported, 14 percent suffered pain, and smaller percentages experienced fatigue, impaired cognition, thirst or delirium.

Still, 80 percent of the physicians said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time from the start of their fasts until death was seven days.

Those results mirror a 2003 study of hospice nurses in Oregon who had cared for VSED patients. Rating their deaths on a scale from 0 to 9 (a very good death), the nurses assigned a median score of 8. Nearly all of the patients died within 15 days.

The slower pace of death from fasting, compared with ingesting barbiturates, gives people time to say goodbye and, for the first few days, to change their minds. Several conference speakers described patients who had fasted and stopped a few times before continuing until death.

That’s hard on families and caregivers, though. And slowness won’t benefit people who are dying with severe shortness of breath or pain. “Two weeks is a lifetime in that situation,” Dr. Quill said.

Other obstacles could restrict VSED. A quiet choice in a private home, it could be derailed in nursing homes and assisted living facilities where administrators fear lawsuits or regulatory sanctions. Physicians might decline to participate; home care aides might quit.

Moreover, major religious groups have yet to declare whether they consider VSED an acceptable act of self-determination or a suicide, anathema in most faiths.

Phyllis Shacter and her husband, Alan Alberts, a computer scientist who received a Alzheimer’s disease diagnosis in 2011, had few doubts, however. VSED allowed him to escape the disease that had slowly killed his mother.

No state allows a person with dementia to use a “death with dignity” law, but with support from his wife, doctor and two caregivers, Mr. Alberts, 76, died peacefully at home in 2013 after a nine-day fast.

“I’m glad my husband fulfilled his desire not to live into the final stages of Alzheimer’s,” Ms. Shacter said.

On the other hand, Judith Schwarz, clinical coordinator of End of Life Choices New York, told of an 81-year-old attempting VSED with inadequate pain medication, crying out to his wife at night, “I’m dying of thirst.”

“And of course, he was, but slowly,” Dr. Schwarz said. “This was a horror show.”

Del Greenfield fared better. “She didn’t use any medicines, just some oxygen,” her daughter said. Ms. Greenfield’s children, grandchildren and great-grandchildren came to see her, and “she was completely peaceful, chatting and joking and telling people she loved them.”

She announced that she had one regret. “We all leaned in,” Bonnie Reagan said. “And she said, ‘I wish I’d seen the Rolling Stones the last time they came to Portland.’”

On the fifth day of fasting, “she just fell asleep,” and died about 36 hours later.

Complete Article ↪HERE↩!

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Why Cannabis For Palliative Treatment Is A Better Choice Than Opioids

By Prakash Janakiraman

Most treatments are meant to heal, but some are for palliative care (end of life care) in terminally ill patients. Palliative care is to provide symptomatic relief from a chronic and serious illness, and to reduce the risk of developing co-morbidities and also to improve the patient’s quality of life. The aim of the palliative care is not to treat or cure the underlying disease, but to treat the bothersome symptoms of the disease. Some of the illnesses that may utilize palliative care treatments include cancer, HIV/AIDS, ALS, multiple sclerosis, etc.

Finding a proper and safer course of treatment (long-term drug safety) is one of the main challenges being faced by palliative care practitioners. The goal of the drug regimen is to alleviate the symptoms as well as to mitigate the adverse events of these drugs. For palliative care of cancer patients, opioid analgesic is the prime choice of physicians, but it can cause serious harm – or even fatal events – in the long run.

The therapeutic potential of cannabinoids to treat sleep problems, pain and anorexia might play an important role in palliative care. Cannabinoids promote analgesia and inhibit inflammation via endogenous signaling, along with other benefits such as neuroprotection and anti-cancer activity, which are significant for terminally ill patients. In cancer patients, exogenous cannabinoids act synergistically with endogenous opioids and provide pain relief, opioid-sparing benefits and reduce opioid dependence and tolerance threshold. Cannabinoids may have palliative benefits not only for cancer patients, but also in neurodegenerative, HIV/AIDS and chronic pain patients. Despite these benefits, the use of cannabinoids in critical and palliative care patients remains controversial.

According to DEA classification, cannabis is a Schedule I drug that is hazardous and without any medicinal value. Most cannabis strains do not exceed 20% THC, whereas prescription drugs, such as Dronabinol, has a 100% THC-like substance, which has been classified as Schedule III drug. Naturally occurring cannabis has several ingredients that augment the treatment benefits and negate the adverse events. However, this is not applicable in synthetic, single compound cannabinoid formulation. To reduce opioid-related morbidity/mortality and improve palliative care in terminally ill patients, considering the cannabinoids as a mainstay pain management drug is the critical need at the moment.  

The risk-benefit profile of cannabinoid-based medicine greatly depends on the drug formulation and route of drug delivery.

Problems Associated with Palliative Care

Opioid overdose-related deaths are rising across the world and in the United States. Increased availability of synthetic opioids worsens the overdose mortalities, and most of the cases are due to misuse or accidental exposure. The widespread expression of mu-opioid receptors in the brainstem leads to increased binding of opioids, which also controls the respiration and is the cause of opioid overdose mortality. Overdose opioids bind with these mu-opioid receptors, which results in the suppression of breathing and death. Long-term opioid treatment also leads to development of tolerance, and the patient often requires incremental dose increases for better pain management. Although, mu-opioid antagonists, such as naloxone, are available to reverse overdose, it must be administered within few minutes of overdose crisis, which is not always possible. In addition to opioid tolerance, opioid dependence or addiction can develop during palliative care. Opioid addiction is a serious, relapsing and chronic neuro-psychiatric illness that requires long-term treatment for recovery.

The complete symptom burden of palliative care patients is poorly understood and opioid treatments may add up to other problems, such as severe constipation and prescription of laxatives to relieve constipation. According to a large assessment study that involved 50,600 Caucasian cancer patients who were on opioid therapy as palliative care, approximately 12% of patients reported moderate or severe constipation at the first assessment, and nearly 19% patients reported the same during the last assessment. All patients were on opioid therapy that resulted in moderate to severe constipation. Prescription of laxatives to treat the constipation is likely in these patients. The goal of the palliative care treatment is to relieve the symptoms, if not to mask the agonizing pain in palliative care patients including terminally ill cancer patients. Opioid therapy appears to be worsening the problems by causing/increasing distressing symptoms that require further treatments, which is undesirable and reflects the complexity and quality of palliative care treatment.

Why Cannabinoids Are Better Than Opioids In Palliative Care

While healthcare practitioners are in dilemma about prescribing medical cannabis for illnesses, the use of medical marijuana for palliative care is trending upward. Medical cannabis significantly reduces the use and dependence of opioids and also opioid overdose-related death. According to a study by RAND Corporation, there is a plausible link between the legal medical marijuana dispensaries and a reduction in opioid-related deaths in those areas. The study compared the rate of opioid-related deaths in states with and without legal marijuana dispensaries. As reported by the study, a lower rate of opioid-related mortalities (16-31%) and fewer reports of hospitalizations (28-35%) for related treatments were observed in states with medical cannabis dispensaries, compared to states without medical cannabis dispensaries. Patients who obtained treatment without legal intervention (penalized due to illegal substance use), further decreased the rate of hospitalization (up to 53%). The duration of the presence of legal marijuana dispensaries were also found to be related with the decline in opioid-related morbidities and mortalities.

Palliative care patients can easily obtain prescription medical cannabis from these legal dispensaries to reduce their reliance on opioids, prevent the opioid-related problems and also for better management of their symptoms. According to Nora Volkow, Director of the National Institute of Drug Abuse, the evidence about the efficacy of cannabinoids is strong and cannabis could ‘provide a powerful new tool’ to combat opioids and their related problems.

According to a comprehensive literature review of available studies, patients reported improvement in quality of life, and the improvements were considered as a therapeutic outcome by the patients. However, the healthcare providers raised concerns, and were in a dilemma about supporting the therapeutic cannabis use, as the used cannabis was illegally obtained.

A Norwegian study concluded that cannabinoids possess therapeutic effects in neuropathic pain, as well as moderate anti-emetic and appetizing effects in certain groups of patients. Due to non-availability of randomized clinical trials, the study authors were unable to recommend the medical use of cannabis. All of these symptoms and indications are applicable for palliative care cancer patients. To treat vomiting, anorexia and pain, a regimen of at least three drugs should be administered, and the patient must go through the side effects of these medicines. Instead of three drugs, cannabinoids as a monotherapy can be considered to treat all three symptoms, which are common in terminally ill cancer patients. Hence there are grounds to employ medical cannabis as a palliative care drug.

Analgesia is a common benefit shared by opioids and cannabinoids. However, cannabinoids differ from opioids in anti-nociception by the involvement of endocannabinoid system. Further studies suggested the additive effects of cannabinoids and opioids in pain modulation. Medications being prescribed to augment the opioid effects and to reduce the opioid doses are called opioid-sparing drugs. Cannabinoids can greatly increase the analgesic potency of opioids and thus relieve pain in lower doses of opioids. According to studies, cannabis greatly reduced the need for opioids, or even complete eliminated the need for opioid use. Additionally, the cannabinoids work synergistically in alleviating some of the symptoms of terminally ill patients, such as pain in end-stage cancer patients.

Clinical trial evidence found that oral cannabinoids (Sativex) provided better pain relief in opioid-refractory cancer pain than long-acting opioids. The treatment was well-tolerated by the palliative care patients. According to three randomized control studies, cannabis use significantly improved the appetite, weight gain and stabilized body weight in AIDS wasting syndrome. These benefits might be helpful for terminally ill patients suffering from cancer-associated cachexia.

Conclusion

Most of the systematic review studies that are inconclusive or even against the use of medical cannabis have assessed the randomized clinical trials of synthetic cannabinoids such as Dronabinol but not plant-derived cannabinoids. Even some of the studies that assessed the natural cannabinoids lacked adequate statistical power due to flawed clinical trial design. Assessing these studies cannot provide a definitive conclusion.

Conventionally, palliative care management for most of diseases – including cancer – is opioids. Due to inevitable risk of tolerance, the patient has to take more and more narcotics, even if the drug provides little relief. Higher doses can make the patients become more confused and lethargic, with the risk of developing depression, anorexia, nausea and vomiting.

Cannabis could definitely reduce the dosage of these narcotics and also improve the symptoms by its synergistic actions. For terminally ill patients, marijuana could reduce the anguish, improve the quality of life and may also add days to their life.

Complete Article ↪HERE↩!

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VSED is gaining traction as an end-of-life option

by Xavier Symons

[I]n the past two decades there has been a dramatic increase in political lobbying to legalise euthanasia and/or physician assisted suicide (E-PAS). Yet even when E-PAS is legalised, many people who have been campaigning for the right to end their lives often remain unable to do so as they do not meet the strict eligibility criteria outlined in law (such as having a terminal illness, and having less than 6 to 12 months to live).

In light of this, and other factors, the notion of Voluntarily Stopping Eating and Drinking (VSED) has gained increased attention in policy discussions. VSED — whereby patients refuse food and hydration and indicate that when incompetent they do not wish to receive it — has been described by bioethicists as a mode of ending one’s life that is legal, in line with medical ethics and a moral prerogative of any patient.

Now it seems that VSED is gaining traction in a clinical context. A new article published in the Journal of Palliative Medicine outlines how long term care facilities such as nursing homes and skilled nurse facilities can facilitate VSED while still respecting “resident safety” and “moral objections to hastened death”. University of Washington palliative care doctor David A. Gruenewald describes how facilities that he has been involved in have managed patient requests for VSED. He argues that VSED may be, where the patient’s wish to end their life is persistent, in accord with “resident-centred care”. Gruenewald calls on long term care facilities to develop evidence based guidelines and guidelines for best practice for dealing with requests for VSED.

In another article in the latest edition of the Canadian Journal of Bioethics, lawyer Jocelyn Downie explores the legal status of VSED in Nova Scotia, Canada, arguing that it is a legal alternative for patients who are ineligible for MAiD (such as early stage Alzheimer’s patients, stroke victims, patients with mental illness and patients with debilitating pain but not terminal illness) who nevertheless wish to end their lives.

Last month BioEdge reported on the case of a 65 year old transgender person from Denver, Colorado, who ended his life by VSED after being diagnosed with early onset Alzheimer’s disease.

Complete Article ↪HERE↩!

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Do We Have A Right To A ‘Good Death’?

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[S]hould doctors do everything they can to preserve life, or should some medical techniques, such as cardio-pulmonary resuscitation (CPR), be a matter of patient choice? Doctor Sarah Simons wades into the debate and argues that ‘do not resuscitate’ decisions are all about patients’ human rights.

Of all our human rights, the right to life is the one most often held up as the flagship, fundamental right: after all, without life, how can one learn, love, communicate, play or have a family?

The right to life is closely linked to the right to health. Under the International Covenant on Economic, Social and Cultural Rights, which the UK has signed and ratified, states are required to “recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”.

Protecting patients’ rights to life and health involves providing necessary life-saving treatment (known as resuscitation) if their life is threatened by serious illness or injury. It also involves enabling patients to live as well as possible for as long as possible: for example, by treating preventable diseases and encouraging people to adopt a healthy lifestyle. However, although many aspects of medicine and health are unpredictable, death is the one certainty for all of us.

Is There a Right to a Good Death?

In recent years, there has been much debate surrounding how healthcare practitioners should approach end-of-life issues with patients. A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.

When healthcare professionals acknowledge that someone is approaching the final stages of their life, and no longer responding to life-saving treatment, treatment is not withdrawn, but instead, the goal is changed to treatment focussed on preserving the patient’s quality of life and managing their symptoms in accordance with their wishes. It’s important to draw a distinction between this and the ethical debate on euthanasia, which is altogether different from end-of-life care and natural death.

A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.

Sarah Simons

This change of focus often includes completing a ‘Do Not Resuscitate’ (DNR) order, instructing healthcare teams not to carry out cardiopulmonary resuscitation (CPR) when the patients’ heart and lungs cease to work. This decision is usually made on the grounds of pre-existing medical conditions and poor physiological reserve and frailty, which mean that CPR will not be successful. A DNR should always take into account the patient’s informed opinion on the matter, or at least their next of kin’s.

A DNR decision only refers to CPR. The patient can still receive treatment for related issues, such as antibiotics for an infection, and all other life-preserving or life-saving treatments can be given until the patient’s heart and lungs stop working. A DNR decision never means that life-saving treatment is not given – the purpose of a DNR is to allow the patient to pass away naturally and peacefully, with dignity and without traumatic medical intervention.

What Exactly is CPR?

Understanding the reality of CPR is vital to understanding why it is a human rights issue. CPR is used when someone has a cardiac arrest, which means they have suddenly stopped breathing and their heart has stopped beating.

CPR specifically refers to the chest compressions, electric shocks and artificial breathing technique used to stimulate and replicate the beating of the heart to pump blood around the body and the breaths taken to inflate the lungs with oxygen. This is effective when a sudden cardiac arrest occurs and someone’s organs stop unexpectedly, but the underlying mechanism of a cardiac arrest is very different from when the heart stops beating as part of the body’s natural decline at the end of life. 

CPR is traumatic, undignified and usually unsuccessful in patients of all ages.

Sarah Simons

Sadly, despite Hollywood’s optimistic depictions of resuscitation, the reality is that CPR is often traumatic, undignified and usually unsuccessful in patients of all ages. CPR will not reverse years of gradually shrinking muscle mass, rejuvenate brains worn down by the steady decline of dementia, remove cancerous tumours or clear obstructed lungs weathered by years of COPD, which are often the underlying causes when someone’s heart and lungs have stopped.

 

CPR will cause bruising, vomiting, bleeding and broken ribs. CPR will render someone’s dying moments traumatic and undignified, and it will leave their friends and families with lasting memories of a failed, brutal resuscitation rather than a mental image of their loved one peacefully slipping away pain-free and asleep.

What Do Experts Have to Say About This?

Guidance published by the General Medical Council (GMC) in 2016 emphasised the importance of recognising patients’ human rights in relation to decisions about CPR and end-of-life care. The guidance recognised that “provisions particularly relevant to decisions about attempting CPR include the right to life (Article 2) [and] the right to be free from inhuman or degrading treatment (Article 3)”.

Article 3 of the Human Rights Convention specifically refers to the right to protection from inhuman or degrading treatment, and understanding the brutal, traumatic reality of CPR is a crucial consideration when thinking about DNR decisions. The GMC goes on to reference “the right to respect for privacy and family life (Article 8), the right to freedom of expression, which includes the right to hold opinions and to receive information (Article 10) and the right to be free from discrimination in respect of these rights (Article 14).”

The GMC guidance also highlights that the Human Rights Act, (which incorporates the Human Rights Convention into UK law), “aims to promote human dignity and transparent decision-making”, which should also be key concerns for doctors making decisions across all aspects of medicine.

Making the Right Choice For The Patient

Having open, frank discussions about CPR, and end-of-life decisions in general, enables healthcare professionals and patients to make informed decisions together. Doing so empowers patients to ask questions and insist that their rights are respected. It gives patients time to talk to their loved ones about what’s important to them, including any religious considerations, before their health deteriorates to a point where these conversations may not be possible. 

Having open, frank discussions about CPR … enables healthcare professionals and patients to make informed decisions together.

Sarah Simons

Avoiding these conversations, while perhaps understandable given that no-one likes to think of their loved ones dying, means that important questions may not get asked and the patient’s wishes may go unheard. Making decisions on CPR and other practical matters is important, but so is acknowledging that someone wants to spend their last days eating mint chocolate chip ice cream at home listening to a specific Eva Cassidy album whilst surrounded by their pets and children.

As the NHS turns 70 later this year, and continues to navigate the challenges of an ageing population, conversations about end-of-life care are more important than ever before. Grief and bereavement are difficult, emotionally charged topics of conversation, but death is a normal human process. Taking the opportunity to talk about what we want at the end of our lives empowers us to make informed decisions and ultimately help all of us to die well one day.

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My Father’s Face

One of my clearest childhood memories is of my father washing his face. Forty-five years later, I would be washing him.

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[O]ne of my clearest childhood memories is of my father washing his face. He did so in a most particular way, with a vigor and thoroughness that made me feel somehow cleaner for simply having watched him. In the mornings, while he got ready for the workday, I’d sit on the toilet seat brushing my teeth as he went through the various stages of his ablutions. This was in the early nineteen-seventies, when we lived in a low-end red brick rental complex near the Sound in New Rochelle. Our second-floor apartment was a small two-bedroom with a living-dining area and a worn galley kitchen. It had one cramped bathroom, its dulled chrome fixtures speckled with rust and the tiles coming loose in spots, but even my mother wasn’t fretting too much. We were just a couple of years landed in the country, and this was as suitable a place as any. My kid sister and I loved the playground and grassy field that the apartment overlooked—you could check who was out there and sprint down in a breath—and my mother appreciated the southeast-facing windows, as drafty as they were, for the brightness they let in. My father was settling into his first doctoring position, as a staff psychiatrist at the Bronx V.A. hospital, and although extra money was scarce, our family was moving up in the world.

My father would turn on the taps until the water ran warm and then liberally splash himself as he bent over the basin, sprays of water dotting me. Like seemingly all Korean men back then, he wore a ribbed tank top beneath his dress shirts, and the shoulder straps would get a little damp as he wet his face and ears and neck. He built up a load of soapy lather and got to work, roughly polishing the sides of his nose and his cheeks in a circular motion and radiating outward to his ears, using his index fingers and thumbs to scrape the nooks and whorls. Making a rake of his fingers, he scoured behind his ears, then shifted to the back of his neck, tilting his head slightly to each side to bare it for forceful soaping. Next, he rotated the bar of Ivory in his hands to replenish the lather, which he needed for cleaning the rest of his face—his eyelids and his temples and his angling, broad forehead, unwrinkled then, going foamy and white. Sometimes he liked to frighten me by turning quickly and opening his eyes wide and flaring his lips, this snowy beast, and then smile when I began to whimper, and although my heart detonated each time, I liked it, too, for the way it was him and not him and him again, in the span of a gasp.

He’d wash away the suds with great handfuls of water, dousing himself while briskly rubbing his skin once more, and you would wonder why he didn’t just take a shower instead. Maybe it was because he was a refugee during the war and grew up in the harsh times afterward, but bathing every day was a habit neither he nor my mother had yet developed. I can imagine them both waiting in line for their brief turn at a cold-water spigot, poised to clean themselves as swiftly and as fully as they could.

On the weekends, I often showered with my father, and he showed me how to rub tiny dark rolls of grime from my forearms and from the scallops of my heels, and then scrubbed my shampooed scalp so hard it would tingle long afterward. My favorite part was when he dried my hair, his method not to blot and rub, as you normally would, but to hold each end of the smallish towel and whip the middle back and forth against my head to flick away the dampness. No plush bath towels for us.

Forty-five years later, I would be washing him, Parkinson’s having rendered his body stiff and frail, his mind loitering elsewhere. With both hands he held the shower bar as I sponged his flanks and hosed him off with the sprayer. I washed his face, too, but with my hands, if more gently than he probably wanted. I tried not to get soap in his eyes. When he was dying, I was far away and couldn’t get to him in time. The hospital morgue staff let me see him. He lay on a gurney with a sheet drawn up to his chin. There was his mouth, in a slight pinch. His sunken cheeks. His forehead was cold wood against my lips. He smelled sterile, almost clean. It wasn’t him. ♦

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